Tag: Parkinson’s

DBS (deep brain stimulation) surgery is a real possibility for me in the near future. My miracle medication, Levodopa, is starting to lose its effect reminding me what I try to forget — Parkinson’s is a regressive disorder. At my most recent neurologist appointment, I had a levodopa challenge test. I had to be off my miracle medication for twelve hours to gather data on how effective this medication is for me. This information is needed for the brain surgery. For twelve hours I had to be reminded of what I try to forget — this disease is not going away and it was frightening to live in that body for twelve hours unmediated.

During the same twelve unmediated hours, I received heartbreaking news that a dear friend’s husband has Alzheimer’s.

As much as I try to forget– there is no cure for many neurological diseases that ravage and destroy. Yesterday forced me to think about what I try to forget– the late stage of these diseases.

I try to forget — some day that will be me. Even though this is a bit sad, I am going to tell you what I don’t want you to forget — when I am in that late stage. Then, you fill in the blank for your loved one.

Don’t forget — this is not the real me. I am not this body but trapped inside it. Don’t forget.

Don’t forget — my smile and how I am not very photogenic. We laughed about this often.

Don’t forget — that I am funny. Tell the stories of all those funny moments we shared.

Don’t forget — that I love dogs. It lifts my heart to have a fur ball snuggled next to me.

Don’t forget — that I am passionate about children’s causes and bettering their lives.

Don’t forget — that I am a fighter. I am still fighting.

Don’t forget — that I’m your friend. I would give you a hug if possible.

Don’t forget — I am your sister. You still need to ask to borrow my clothes.

Don’t forget — I am your mom. I love you dearly for who you are, not what you do. I brought you into this world and I may not be able to take you out now, as the saying goes, but you know my expectations– men of character.

Don’t forget — I am your wife and even though you now are my caretaker, I am passionate for you, adore you, still love your legs. Keep biking. You have great legs.

Don’t forget — the real me. I’m just trapped inside this mortal body.

Don’t forget — to be happy. I believe in Jesus. You don’t have to worry about me. I look forward to heaven where I will be greeted with a new whole body.

Don’t forget– I love you.

For your loved one, what would they say.
Don’t forget — ________.

While I am still in the earlier stages and don’t expect this to be me for a long time, and I am still praying for a cure. I want to remind you some day — don’t forget.

To all my fellow Parkies out there. This is for you! If you do not know what a Parky is then you are missing out on some of the greatest people I know.
My fellow friends with Parkinson’s Disease, I had my 4 hour cognitive ability test yesterday as one of the measures to determine if I’m a candidate for DBS surgery, and I would like a redo! I would demand a redo, but I know it would be futile.

At one point in the 4 hour process that will determine my fate, I was given one minute to come up with as many words as I could think of that start with the letter L. No problem. Those L words rolled off my tongue with ease. Then I was asked to name as many C words as possible- piece of “cake.”
Then she said name as many F words as possible and for about 10 of those precious 60 seconds the mother of all F words was stuck in my mind and would not get out of the way of all the other more innocent F words that wanted their turn. I stumbled and stammered to pull those pleasant F words out from behind the big one. But like a bully, it stood its ground in my mind and blocked my other F “friends.” I thought about just saying the big one to release the others behind it, but then I
would have to admit to the evaluator the fact that word existed in my mind. So for the remaining 50 seconds, I fought off the “word that shall not be named” and held up my honor, but I’m sure lowered my score.

So neuropsychologists everywhere, take note, please pick another letter besides F during your cognitive ability tests. If you use F, your data will be skewed because most of us do not want to admit that the F word exists in our minds or has ever been spoken out loud when only 60 seconds determines our fate. There are 25 other letters from which to choose, and I get F, gosh darn it!

They are Lorisa’s favorite– her red high top tennis shoes. You see them somewhere on almost every page of the book. When they are on her feet — always untied.
There is a the back story about red shoes. Lori’s oldest boy played little league baseball like many boys do when they are seven and eight years old, but you will not hear of his name in the MLB because it was soon discovered that his gift was numbers and baseball stats. He is a successful financial consultant today. Oh, but he did have a pair of coveted red baseball shoes that he passed down to my oldest boy two years younger. My oldest wore the flashy red shoes for one year of little league. He soon realized that baseball was not for him the day the coach had to yell out to him in the outfield “take the glove off your head!” Today he volunteers his attention and time to young kids through the Big Brother program who are also at times are being told “to take the glove off your head.”

Next, the red shoes were handed down to my middle child. They were actually a size too big and flopped on his feet the first year he wore them. However, the minute he put them on and a teammate said “cool,” it was like those shoes were magic. He wore them for the next two years until the rubber cleats were completely worn down. You will not find his name in the MLB either. He traded his passion for baseball for a career as a sales analyst. Lori and I share cherished stories of a little boy who looked up to his older brother and older family friend so much and insisted on wearing red shoes a size too big for him. He was even nicknamed “Red Shoes” for a few years.

So as you read the pages of NOT YET and see a cute little girl proudly wearing her high top tennis shoes, you now know the precious memories that Lori and I share of “red shoes.”

Why are Lorisa’s shoes always untied …… because “she’s not quite there yet. She’ll get there. You bet!”

If each of our lives is a story, and I do believe each and every one of us has a story to tell, today’s page of my story would have tears staining the ink on the page. Today is a day I let go and trust. Today, I say good-bye to the idea of going back to the profession I love. Today, I turn in my letter of retirement much earlier than I ever anticipated. Today Parkinson’s knocks a little wind out of me.

By tomorrow, I will turn the page and look for new opportunities. Tomorrow, I will quit pouting and see all of the windows God is already opening as this door quietly closes in my life.

Actually, I won’t wait to turn the page of tomorrow. I will mentally put those boxing gloves on (physically put them on tomorrow) and hit back

I will do as the song Heather Richardson and I wrote…..

“dig deep, find strength, and trust. And throw that First Punch”

But……. first I will reflect on a line that Heather and I wrote in another song that I hope you all will be hearing her beautifully sing sometime soon…….

” Today is marked by a ribbon of tears to close the chapter of” my counseling years.

Some things of your youth should not ever be resurrected. That’s what we discovered when I purchased a used French horn about a year ago.

One of the many non-motor ways Parkinson’s affects me is my voice volume. Common words from my husband are “what, I can’t hear you, you have to talk louder.” Remembering my glory days of fighting to remain in first chair position as a fine-tuned French horn player in high school, I thought bringing the beautiful sound of this instrument that adds depth to so many songs as an accompany instrument was the answer. I read that playing an instrument could strengthen muscles and help with voice volume, and it’s true. I forgot that there were a lot of um, pa, pa’s played by the French horn in most songs as the flutes had the main melodies. Oh, but there was Tchaikovsky. I envisioned playing Tchaikovsky’s 1812 Overture with the same precision as when I did in high school. In this piece, the French horn finally gets its glorious moment taking center stage of that grand song commemorating Russia’s victory over France.

Mr. Eric Wainscott, beloved band director of my youth, I hope you get to see this video. From the moment in the 5th grade when you helped me select this instrument that would be part of my life, it has strengthened me. Mainly, from all of those years lugging it back and forth each day from school, as I enviously watched my flute playing friends tuck their instruments under their arms and skip home. But I also learned from this instrument that most of life is spent as accompaniment — in the background. The world doesn’t revolve around me as usually it didn’t in songs for the French horn — except for in the Overture of 1812.
Just like Russia battled France as portrayed in Tchaikovsky’s song, I will battle Parkinson’s. — it just may not be with playing the French horn.

My greatest victory is my three boys plus husband who lovingly endured my attempts at bringing back to life a time of my past history.

I love this video made by two of my three boys. The laughter it brings me, may not do much for my voice volume, but it strengthens my soul.

Sometimes reality makes me come to the surface and truly face what is happening in my brain. That is what happened yesterday at my appointment with my neurologist. From the moment he walked in the door, I knew he was analyzing my every move, word, and expression. He was looking for signs of regression, and that makes me have to face for a moment the physical changes that are slowly happening to me. At these times I feel like I can’t tread water or swim fast enough to get away from the raw reality of it.

I knew going into this appointment that I have noticed that my meds were not working as well. I guessed there was some regression, but yesterday I had to face it, grieve it, and feel it. It was a hard day.

This morning the sun is shining. I hear the birds singing, and I plan on living today to the fullest.

…… And I plan to submerge myself in the tranquility of denial, not denial that I have Parkinson’s.Today I will drown myself in the comfort that it does not define me. I will deny this disease any power over me. Today I will push back any fear that has resurfaced and focus on the beautiful routine of the day.

Today I will drift and let the current pull me far away from any negativity and closer to my creator. Today I will trust my God. Today I will quit fighting the undertow of faith and belief in a bigger plan than I can see. There is a bigger and plan than pain and suffering.

That is until July 25, my next neurologist appointment. Then I will have to resurface again, but only for a day!

I like a movie with a good happy ending. I saw one awhile ago that had everything but that. It is called Open Water. Now if you plan on watching this movie, stop right now because I am going to tell you the ending.

Basically, a married couple go on a tropical vacation. They go on a scuba diving adventure. They are having a great time diving, but when they surface they find their boat has left without them. The scuba diving guide miscounted and did not realize his mistake for days. The majority of the movie is spent with the two of them bobbing up and down with a few boats that pass too far away to see them. Eventually, the man gets bitten by a shark and dies in her arms. Then she just takes off her life jacket and goes under. I hated it. Where was the redemption? Where was the hope? Where were the rescuers who would risk all to bring them home?

They say it is based on a true story. That makes me shudder as I have been scuba diving about 3 times. This couple placed their trust in their guide, the scuba diving company, their watches, their equipment, their rescuers, and each other. None saved them from their plight.

Sometimes I feel like my life is kind-of like that open water. And it makes me think about where I place my trust. If you are a Christian, you will understand when I claim that I place my faith in Christ alone. There is a familiar song that I have sung often in church. It goes ” in Christ alone, my hope is found. He is my light, my strength, my song.” Yes, I profess that I place my faith in Christ alone. Those of you who are not Christians, to you I I fully admit that I live as a hypocrite most of the time. If I am honest with you and myself, I place my faith in my comfortable home, my job, my husband’s job, my health insurance, my family, my doctors, my food. I could go on and on. Those worldly things are not bad, but they are as fleeting as that negligent boat that left the couple in open water in that movie. There have been times in my life when I have been striped of those worldly things that I mentioned and have felt as vulnerable as those unfortunate scuba divers.

In 2010 when my health the striped away from me is one of those times. I felt panic, despair, and the fear was like sharks nipping constantly. But unlike the movie, I stopped bobbing and trying to battle that fear nipping at me. The words to that song became a reality. I was forced to either keep battling myself or live those words I have sung for years — in Christ alone. I finally surrendered my plight to him. The rescue chopper did not come. I am not miraculously healed. He could have sent it. Instead, I feel like he has put a shark barrier around me, protecting me, and giving me wave after wave of joy and blessings in my plight. That is real. That is how Christ rescued me. I can without reservation claim “in Christ alone.”

We all live by faith in something. There is only one I have found who can protect me from the sharks of life. In Christ Alone.

There is a sequel! It’s called Open Water 2. If you plan on watching it, again stop reading. In this movie there is a new set of friends on a sailboat sailing across the ocean. How does it end? Well, let me just say this. It’s all fun and games as you push each other in the ocean until after the last man jumped and you realize that someone forgot to put out the ladder and you can’t get back into the boat. More sharks!

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